Lyme Disease Update – May 2017

IF YOU HAVE SUFFERED FROM LYME DISEASE, YOU ARE LIKELY FEELING FRUSTRATED BY THE FED’S BACK-PEDALING

As Infection Spreads Across the Country, Feds Fail to Protect the Public

“A Lyme diagnosis is a clinical diagnosis when you make it, and then it becomes a political statement. It is the 300-pound gorilla in the waiting room.”
– Bob Giguere, of the U.S.-based IGeneX laboratories, at the Lyme Out Loud Kids Canada conference, April 21, 2017

The recently released government document entitled “Lyme Disease in Canada – A Draft Federal Framework,” is an insult to all of us Canadians who’ve paid for it with our tax dollars.

Crafted by the Public Health Agency of Canada, the document, released in February 2017, proposes a framework for the diagnosis and treatment of Canadians infected by Lyme Disease (LD). In order to create a framework that draws from the best available scientific research, the Public Health Agency had hosted a public conference on Lyme Disease from May 15 to 17, 2016. Problem is, the insights that were gained from global experts who lectured at the conference did not find their way into the draft federal framework released in February. In fact, the proposed “Draft Framework” is so peculiar and out of touch with the facts that one can only conclude that the Public Health Agency had already drafted the document before the conference even took place.

More specifically, the framework contains two total affronts to those in the LD community:

1) It claims that Canada follows the guidelines of the IDSA (Infectious Disease Society of America) – however, the IDSA is currently still developing their recommendations, as all medical guidelines must now meet the standards of the World Health Organization (WHO) and Institute of Medicine (IOM). The IDSA’s previous guidelines led to a 2006 antitrust investigation by the Connecticut Attorney General because they were written to benefit the insurance industry and did not reflect current science or patient needs. The authors of these ‘guidelines’ themselves were shown to be owners of vaccine patents (no human vaccines exist to date), receiving million-dollar consultation fees from insurance companies in return for recommendations that would make LD difficult or impossible to be covered. Some of these authors have even been sued by Lyme patients for neglect and injury. The patents and payments are listed in the April 2001 report put out by Lyme Disease Association, Inc., which spans no less than 42 pages. (For a full legal analysis of the conflicts of interest in the IDSA’s now-defunct guidelines, read J. Ferguson’s brilliant Cure Unwanted?)

By contrast, the International Lyme and Associated Diseases Society (ILADS) has comprehensive diagnostic and treatment guidelines in place, and their latest version already meets the standard established by the WHO and IOM. They are, in fact, the only guidelines available today. Nonetheless, neither the Health Canada nor Public Health website even mentions ILADS, but both assert they follow the IDSA guidelines.

2) The proposed Public Health framework for Lyme Disease concludes by stating that the issue will be revisited in five years. Thus, the roughly 35,000 Canadians who are newly infected every year, as estimated by the U.S. Centers for Disease Control, are left with nowhere to turn. Lyme is an infection that can become chronic (as more than 700 peer-reviewed mainstream publications agree) and is known to lead to Alzheimer’s, Parkinson’s, inflammatory bowel disease, some forms of schizophrenia, multiple sclerosis, and ALS – all of which are very expensive to treat with the outdated protocols used by Canada’s Medicare system. Yet in some cases, these conditions have been shown to be curable by antibiotic treatments as per the protocols of ILADS for treating Lyme Disease. For ILADS, all of these conditions are expected to be part of a differential diagnosis – that is, physicians must first rule out Lyme infection before proceeding with any other treatment.

Canada’s Public Health Agency allowed for less than a month of public comment about their document, yet more than 9,000 furiously protesting Lyme patients wrote within the first couple of days of the framework’s publication, and almost 40,000 signed a petition to the federal health minister, Jane Philpott, demanding that the framework be scrapped. Protest marches in Ottawa and other cities are now being planned (see organizations cited in the Resources below to participate). In the House of Commons, the NDP demanded the document’s removal.

The Public Health Agency appears to have anticipated this backlash and took defensive action by publishing an article in PLOS One, one of the few remaining respected medical journals. Claiming to compare the “accuracy of diagnostic tests of Lyme Disease in humans,” and describing the paper as a “systematic review and meta-analysis of North American research,” study authors L.A. Waddell et al., employees of the Public Health Agency, submitted the article to PLOS in August 2016. They were thus able to claim that their framework for handling the Lyme problem was supported by a rigorous comparative study of the best available science.

Lyme Patient Support Group Disputes Validity of Government Report

CanLyme, Canada’s national Lyme patient support group, published an analysis of this study on January 30, 2017, written by Sin Hang Lee of the Milford Diagnostics Laboratory, developer of an accurate DNA-based test for Lyme. In it, Lee showed how – by cherry-picking certain tests, excluding others, and ignoring the connections between early LD symptoms and illnesses like Parkinson’s and Alzheimer’s – the aforementioned comparisons become meaningless.

The Public Health authors also assert that the diagnostic “gold standard” is the isolation of the disease-causing pathogen in a blood sample. Not so, as Lee informs us: “The gold standard in molecular identification of bacteria is bacterial DNA genome sequencing.” Lee compares the process to a Xerox copier generating a large number of copies of a questionable paragraph with only a few words available at the beginning and end. DNA sequencing is designed to actually decipher the order (sequence) of the alphabets (nucleotide bases) of the paragraph in question. “Waddell et al. avoided mentioning DNA sequencing-based-assays for Lyme disease to justify their own one-sided endorsement of serological tests,” said Lee. Well, of course! Health Canada’s website strongly discourages PCR testing without offering a single reference. If the tests Lee refers to were available in Canada, we would actually be getting somewhere!

The Waddell et al. authors state that PCR tests, as described by Lee, are commercially available “but have not been licensed for use by a governing body.” In fact, “laboratories performing PCR tests are licensed by the State Department of Public Health.” Interested Vitality readers can see the entire analysis of this document, as posted on CanLyme’s website. As Lee concludes, “The first step to the Lyme disease solution is to cut out the tribalism among the scientists whose careers were built on Lyme disease research.” Lee is too polite to add that some of those scientists’ careers were provided with financial incentives, and reversals would result in a loss of reputation and money.

One thing is certain: the Public Health Agency’s ‘study’ constitutes a gargantuan betrayal of public trust. How this carefully orchestrated nonsense made it past PLOS’ editors remains a mystery.

Lyme Disease Conference Brought Together Experts from Around the World

Turning away from the February 2017 document released by Public Health that presented a woefully inadequate “framework” for treating Lyme Disease, and towards the excellent May 2016 conference which preceded the document, we are left to wonder how such a remarkable event gave rise to such an inadequate government report.

Hosted by the Public Health Agency of Canada, on behalf of the Minister of Health, the “Conference to Develop a Federal Framework on Lyme Disease” brought together numerous speakers including world-renowned Lyme experts Brian Fallon of Columbia University and Elizabeth Maloney of the American College of Physicians and Surgeons. These two had actually contributed to the 2010 book I edited and co-wrote, Ending Denial, which was one of the information sources that prompted MP Elizabeth May to introduce her federal Bill on Lyme. MP May’s Bill C-442 legally requires internationally recognized diagnostic tests and treatment protocols, the development of proper medical surveillance to track Lyme Disease incidence and costs, and education and awareness to make Canadian doctors Lyme-literate. As May stated at the 2016 conference: “We must put an end to the status quo, in which sick Canadians are forced to go to the U.S. for treatment at their own expense, losing homes, savings, and pensions.”

Everyone ought to read the conference summary, which is available online. Among other things, the report correctly states that:

– “Canada’s medical system has failed Lyme disease patients” and currently available tests are inadequate;

– the incidence of LD is underreported (even though reporting has been legally mandatory since 2009).

– spouses and other family members of every suspected Lyme patient must be tested properly, because LD can be “transmissible sexually, via saliva and breast milk, blood, and organ donation.” (Note: all Western countries except Canada require blood donors to answer a rigorous questionnaire to exclude the possibility of active or past LD.)

On a positive note, a significant portion of the conference summary is devoted to envisioning a successful approach to LD in Canada. This includes the need to consult veterinarians, who are already effectively treating animals for Lyme.

One measure of success was identified as the renewal of “trust in the medical system.” And my jaw dropped when I read that “coroners should be required to submit tissue samples [from] … patients who died of Parkinson’s or Alzheimer’s,” recognizing that Lyme can cause these diseases, too. The Public Health Agency appears to have reached that stage of research knowledge.

Dr. Gregory Taylor, chief officer of Public Health, observed in his concluding remarks last May: “If we are not helping individual Canadians, we are not making a difference in their lives, then we are not doing our job.”

Where Do Lyme Disease Sufferers Go From Here?

So, now what? If you have suffered from Lyme Disease, like I and several members of my family have, you are fully justified in feeling frustrated by the federal Public Health Agency’s current back-pedaling. However, now that Public Health has had that conference and the truth about one of the world’s most exponentially increasing infectious diseases has been acknowledged and published, the information can’t be denied. For the first time in this four-decade long disaster story, just about all of the once “controversial” information has been acknowledged as fact, and facts have an uncanny way of not disappearing once they are let out.

Another important fact is that Canadians can currently only be healed from LD by going elsewhere: to the U.S., to Europe, or even to India – and, of course, they must pay for it themselves. Meanwhile, we must continue to fight here against the aforementioned irresponsible “authorities” and stop them from subverting the public interest.

Dennis, L. Lyme Madness: Rescuing my Son Down the Rabbit Hole of Chronic Lyme Disease. Soulwork Publishing, 2016. This is an excellent resource for Canadians navigating the Lyme jungle.

Horowitz, R., MD. How Can I get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease. St. Martin’s Griffin, 2017. Highly recommended!

Ferguson, J. “Cure Unwanted? Exploring the Chronic Lyme Disease Controversy and Why Conflicts of Interest in Practice Guidelines May Be Guiding Us Down the Wrong Path.” American Journal of Law and Medicine 2012, 38(1): 191 ff.

Waddell, L.A., et al. The Accuracy of Diagnostic Tests for Lyme Disease in Humans, A Systematic Review and Meta-Analysis of North American Research. PLOS ONE 2016, 11(12): e0168613.

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